New to the forum - diagnosed in November, surgery done - what comes now?

Hi all,

I’m new here.

I’m 47 years old, and got diagnosed this November with DCIS in my left breast. I have already had a mastectomy and this seems have to have done the trick for now.

We are now looking into the aftercare procedures and my oncologist recommended Tamoxifen and mentioned a new study, where men might be ok to take only 5mg per day.

Can I please ask you abour your experiences with Tamoxifen? What side effects did you have and were they permanent or just interim?

Also, I’m going to have a genetic test done in January. Has anyone out here done the same?

If yes, what was done in case the genetic test was positive?

Thanks all in advance for your help. I’m still trying to get my head around the entire situation.



Welcome to the forum HJ  ,hopefully some of our male forum members will have some knowledge about the study and also the impact of Tamoxifen for them @The Plumarade   Doug ,can you help ? 
Best wishes Jill x 

I know of at least one man on here that has had a genetic test who will reply when he sees this . 

Hello Hj

im glad you found here , but sad for the reasons you did .

I’m very surprised but I’m not a dr, that you had a full mastectomy for DCIS……the reason I say this is my sister had this 14 years ago. She had radiotherapy treatment, then 5 years of Tamoxifen…….no mastectomy 

As I said  I’m no Dr …and they obviously offered you what they felt to be the right treatment.

Tamoxifen ….if you read other comments in this male zone, you’ll hear a diverse range of side effects from zero, to intolerable.

I myself was diagnosed Tamoxifen following an Grade 3 Invasive Ductal Carcinoma.   Whereby I  too had a mastectomy followed by a full axillary clearance because the cancer was in one lymph node out of twenty six removed. I then had Chemotherapy 

I then had radiotherapy slightly different to most due to Covid …I had 5x3 strength over 1 week, instead of 15 sessions Mon/Friday over three weeks.

I then had Tamoxifen ….for about 8 months, I couldn’t tolerate the side effects, so was prescribed Letrozole , again about 6/7 months later changed due to side effects to Extamastene…no physical side effects, but unbeknown to me, it was raising my blood pressure, which in turn 

caused a previously diagnosed Abdominal Aortic Aneurysm, to grow so much, that the tablet was stopped…and two months later I had an emergency open surgery graft repair to that issue.

im telling you this so you hear it in context .

Hormone related therapy including Tamoxifen is to prevent an Oestrogen based breast cancer returning. As you have mentioned you’ve been offered Genetic testing, which is good….all men should be offered this because our condition is so rare. Did you have a family history of breast cancers

mine was offered because my mum and a sister had had, breast cancers ( my sisters was DCIS just like yours)

again due to Covid I waited over 2 years for this genetic test, getting the results in Jan2022.

I was diagnosed with the BRCA 2 Gene abnormality. Strangely the hereditary link was not on my mums side but my fathers……

one month ago a cousin (dads side) who got BC a month after me was also tested as BRCA 2 

Hopefully you will go through the counselling aspect of Genetic testing prior ….this helps you prepare for either a yes no answer……

its not just a test for you so to speak…if positive you then have to tell, siblings, children, grand children….it’s a big issue in truth….

I just hope all your treatment runs smoothly, your tests are all negative, and life gets easier day by day.

either way there are still people on here , Just Like You, …who you can chat too to VENT……

believe me it’s good to Vent

ps…re a positive result for BRCA 2, I personally decided to have my non cancerous breast removed at the same time two years later (june 2022) when I was due reconstructive surgery to my original mastectomy, that was causing me issues .

removal is a personal decision I won’t advocate or deter anyone….

but prophylactic surgery is offered to ladies with BRCA 1 and 2……and often as a matter of course .

I as a bloke had to ask quite firmly to be given an equal opportunity to ladies….thankfully my surgeon fought my corner at an MDT…and it was sanctioned for my preventative mastectomy….

not often offered to men…

but if ???  
it occurs with your good self , where you may or may not require it………don’t be fobbed off

if you chose this same path as myself.

take care of you